Call for a long overdue discussion on this seldom disclosed issue with PwP's.

[pdpatient]

Credit goes to @mckchart for bringing to the fore the issue of PwP suicide. Please read this discussion and offer your own thoughts.

Here's @mckchart 's original comment on @cleo16's post :

@mckchart said :

I asked the same question (why me ) but get one thing straight it’s not a death sentence so be very positive and make sure you don’t let it get you down ,many a famous person has thrown in the towel and done the unthinkable ,just make sure you have someone to talk to when things get on top of you .......Parkinson’s educator ( feel free to contact me )

Here is my response :

@mckchart, the "unthinkable" was excellently phrased by you and I couldn't have said it better. However, you have inadvertently opened the proverbial pandoras box for some PwP's such as me.

I was formally diagnosed in the early summer of 2014 by an MDS af the University of Columbia, NYC. I fell into a rut and things went ft bad to worse and I was contemplating the "unthinkable," which I really hadn't thought through. My son was 14 and my daughter was 9 and I was the only breadwinner of the family. My only concern for my family was that I would need to die in such a way that it could not be labeled as a suicide. I had my policy long enough, but I could not trust in the system to honor the payout for a suicide.

Around that time, my most favorite movie actor - Robin Williams was also diagnosed with Parkinson's. I was devastated. Next thing I heard, he had committed suicide. Oops. I have said the "unthinkable," but it is time for us to face the monster head on and find a way to make this widely known to PwP's, newly diagnosed PwP's and their families.

Thankfully, my family came to my rescue and I agreed to take powerful medications that brought me back from the brink. I survived and my family is doing well still. I am grateful to God and the Universe for everything that I have been fortunate to receive despite my perception that others are more deserving than I. After all there are almost 8 billion people on this planet and I am only one of the lucky ones that is still alive 😂😭😭

I learned along the way that life doesn't end with a Parkinson's diagnosis. Every doctor that I have met has told me that I was not facing a death sentence. True. However, what they don't say is that the possibility of suicide in newly diagnosed PwP's is extremely high. This is an existential problem that is overwhelming in its impact and understated in its awareness.

Unfortunately, I am still haunted by the ghosts of this seemingly "easy way out" or so as it seems. It is a path chosen by many and it rears its ugly head once in a while when the symptoms get worse.

This is a topic that is ripe for involved and in depth discussion.

[Nitro53]

I believe that I will someday take my life when the quality of it becomes degraded. I will not have people taking care of my most personal issues and have no desire to burden my family. QUALITY of life is most important to me. I take each day as it comes and look for ways to improve it but the reality of what’s going to happen in the future is undeniable. I hope for many more years. That’s all I can do.

[pdpatient in reply to Nitro53]

@nitro53, try to be positive and everything else will work out in the end.

After all, everyone must go someday. Hopefully, not earlier.

RKM

[Nitro53 in reply to pdpatient]

I am positive most of the time and no everything else won’t work out in the end. This disease will eventually take everything from you unless you die from something else. And yes everyone must go someday and when the quality of life becomes what it shouldn’t be to me I will leave with no regrets other than being the recipient of this disease.🙂

[park_bear]

The link in your post does not work.

Robin Williams actually had Lewy body dementia. His partner at the time said she did not blame him for taking his own life – apparently he had dozens of symptoms.

I do not expect to do myself in over Parkinson's. However, at one time I had an uncontrolled chronic pain condition that did cause suicidal ideation.

Each person's circumstances are unique. It is important to tend to our responsibilities. That said, if someone's health situation is such that they deem it fitting and proper to leave, it is not my place pass judgment on that decision.

I get that your mention of income is in the context of why it was appropriate for you to stay. However, income is not a measure of worthiness, and a more modest description would be preferable in my opinion.

[pdpatient in reply to park_bear]

So noted and I can understand why that information might offend many.

Check back in 15 minutes. The post will be modified.

Thank you for always watching my back. Much appreciated and obligated for your kindness.

RKM

[sharoncrayn]

You might want to refer to this Korean study found in science direct.

sciencedirect.com/science/a...

"Suicide risk in PD patients is approximately 2 times higher than that in the general population. Psychiatric disorders, and also L-dopa medication need further attention with respect to suicide."

Another good overview can be found in Neuropsychiatry Review

Suicide in Parkinson’s disease

jnnp.bmj.com/content/90/7/822

"Suicide is consistently listed among the top 10 causes of death in the USA, with rates steadily climbing throughout the 21st century and reaching an annual rate of 13.4 deaths per 100 000 in 2016.6 7 It is a dominant cause of mortality among the elderly and persons with neurological diseases including stroke,9 Huntington’s disease10 and epilepsy."

" Depression in particular is common in PD, with one meta-analysis suggesting that 17% of PwP suffer from major depressive disorder and 35% suffer from clinically significant depressive symptoms."

In contrast, suicide is not a major cause of PD death (which are falls and pneumonia.)

Sharon

[LAJ12345]

Many antidepressants have suicidal ideation as a side effect. Is it the PD or the medications causing this?

[pdpatient in reply to LAJ12345]

Good question, @LAJ12345. It would be nice to know, isn't it. That being said antidepressants do cause suicidal thoughts and perhaps the fact that one does not act on those thoughts might be the difference.

RKM

[sharoncrayn]

The first paper to report on suicide in PD was the 1967 article by Hoehn and Yahr, (of the H&Y scale for PD) which described causes of mortality in parkinsonism. Among 340 patients (basically from the NYC metro) with Parkinson’s disease who died during the study period, three died by suicides (.0089% which is well below 1%). Importantly, there was little distinction between idiopathic and atypical parkinsonian syndromes at that time, and the extent to which this contributed to the suicide rate is unclear but perhaps unimportant given what we know today.

Currently, large studies have confirmed that multiple variables (drugs, depression, isolation, gender, age, PTSD, etc.)contribute to increased suicide rates (see annual VA studies on suicide). Separating PD as the primary causative variable would be extremely difficult.

Sharon